Friday, April 8, 2011

A good day.

Kinda. OK mostly.

Yesterday I took Abby into church to meet with the ladies in the bible study group. They had been asking me to come in for a while. One car and Mr Workaholic didn't realty make that possible. We were going because they want to help me take care of Abby. Respite, babysitting, in case of emergency things like that. I have all but made the final decision that I don't want to have another stranger sent from an agency in my home. Especially after finding out the last one..one of the biggest in the state doesn't even drug test their employees. Seriously!

It was hard to take her in there. Those women are so loving and do not hide their emotions well. Abby was all but unconscious from the up in seizure meds so there were a few tears.

I didn't really prepare well. I just kinda went in a blabbed. Some of the ladies looked pretty overwhelmed by the thought of the meds and the gtube. Its not hard. I got showed once before we left the hospital. There is a ton to remember but everything will be written down step buy step and no one will be left with her until they are comfortable.

I just need to be able to go to a movie or a library or anything. The boys get to leave and stay gone whenever they want. With my responsibilities and lack of a vehicle leave me trapped...and I am beyond losing it and past the pride portion of not asking for help. I don't want money just time and care. Unless someone were to win the lottery....

After the meeting I decided not to take her to school. She had not woken up since 9pm the night before except for a moment while I was dressing her. She ended up sleeping till about 430 pm. I hate seizure meds almost as much as I hate Rett Syndrome! Almost!

OK so the good part..or the better part. As most of you know Abby has almost no functional hand use. She occasionally will swipe in the direction of what she wants but rarely makes contact and cannot grasp or hold.

Yesterday at Hippotherapy she amazed us. It may not be something that would be amazing to a Neurotypical parent but for a Rett Parent...We don't take anything for granted.

I was sitting next to Jen. Rivers Mom. Abby was on her horse on the other side of the arena.I really cant see that far so I thought that I imagined that Abby had something yellow in her hand. Jen turned to me and said did she just have that in her hand? We weren't sure so we kept watching. When they got her closer they did it again. She reached into a bucket and pulled out a yellow sponge the lifted her hand and dropped it in the bucket. You would of thought she just scored a touchdown at the Superbowl..except you cant scream at Hippotherapy because you will spook the horses your children are on. We stiffled our screams with hugs and tears. It was an incredible moment.

When she got off the horse I asked them what they were doing and she showed me..She made her do it again while standing with support and she did it. The therapist there is new and was just doing normal OT. I love the new people that come in with that lets see what she can and cant do and work on it. Because frankly, I have had it with the old, tired, none of these kids can do anything but soil themselves attitude.

Her Boss is getting a call today.

And Abby will be getting a bucket full of sponges in her Easter basket!